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Mum of two can't cuddle her children without fear of collapse and paralysis

By Kelly Rose Bradford , Apr 19, 2012

Mum of two can't cuddle her babies without fear of collapse and paralysis HotSpot Media

A devoted mum is terrified that she may have passed a rare condition which sees her COLLAPSE if she LAUGHS or is made to feel emotional by her little boys.

Kelly Timson, 25, has cataplexy, an extremely rare neurological condition which causes her body to go into paralysis if she is amused, angry, surprised or even feeling strong emotions like love.

Even looking fondly at her two little boys, Charlie, five, and Ronnie, two, can leave her unable to move or speak.

The young mum can have up to 20 attacks a day, and is unable to be left alone in case of a collapse. Her mum or brother stay with her at all times to ensure she is safe, after once having almost suffocated after collapsing and landing face down on her sofa.

As well as cataplexy, Kelly also suffers from narcolepsy, which means she falls asleep without warning, no matter where she is or what she is doing - she can't even go out to dinner with her boyfriend in case she falls asleep at the table!

Kelly says: "I've lost count of the number of times I've fallen asleep face down in my dinner. It's so embarrassing. Once I had an attack of cataplexy in the supermarket and then another and another. I must have had about 20 in a row and I think people must have thought I was drugged or drunk. Every time I stood up, I collapsed again."

Kelly says that she can see and hear when she has an attack, but cannot move or communicate. The episodes can last just a few seconds, or go on for an hour, leaving her unable to tend to her children - something that leaves Kelly terrified of being alone.

"The worst times are when there is no one around," she says, "I might be lying on the floor, completely paralysed and the boys will be pulling all the food out of the cupboards and there's nothing I can do. That's why I don't like to be left alone with the boys in case anything happens to me or them."

Kelly's first episodes of narcolepsy happened when she was 16. She found herself falling asleep during the day even after a good night's sleep. It worsened over time and she was given medication. When she fell pregnant with Charlie at 19, she began to get symptoms of cataplexy, finding herself going limp when holding her baby, and fearful she would drop him.

"I would have to call to my mum to come quickly and grab Charlie off me in case I dropped him," she explains, "I would just be looking at him and thinking how much I loved him and then all of a sudden my arms would go floppy. I was really worried because I was terrified of hurting him."

Kelly was diagnosed with cataplexy in 2007. She is now terrified her son Ronnie might also have the condition, after he suffered a fit in a supermarket a fortnight ago. They are waiting for the results of tests.

Kelly says she would 'hate' for Ronnie to have it, as it 'affects every aspect' of her life', stopping her from doing things most people take for granted, or enjoying a social life:

"I'd love to be able to go for a drink and have a laugh with my friends," she says, "but I can't. As soon as someone cracked a joke I would be paralysed on my bar stool and it would be mortifying.

"I'm trying some new medication at the moment and I'm waiting to see how that goes.

"With any luck it will help my condition and I might even be able to go to a comedy club someday!"

Poor woman! Imagine not being able to enjoy a giggle and cuddle with your babies!

My darling toddler, thank you for...

...saving me pennies on the phone bill
 Just imagine how many calls I might have made by now if the phone was EVER where it should be on its cradle! The telepathy thing isn't coming on that brilliantly, though, if I'm honest. Daddy never seems to receive the message 'bring more wine'.
...decorating the house
 You’re right. We really were very unimaginative when we painted it in shades of off white, hoping to achieve stylish spaces that exuded light and airiness. That big smear of chocolate you made by wiping your cheek on the wall in the living room actually matches the cushions! And should I ever enter the house and forget where the kitchen is, the line you drew with non-washable felt-tip the entire length of the wall in the hall will show me the way.
...boosting the local economy...
 ...by, for example, providing work for the exterminators, who come to catch the mice, who come to eat the food that you somehow manage to deposit, in minute amounts, all over the house in places that should be impossible to get to.
...the interesting beauty regimes
 I do remember reading that avocado is excellent for one's skin – although I’m not sure about your particular method of mixing it with snot, and transferring it from your face to mine with that expert lunge/sweep manoeuvre. Especially when I already have my make-up on.
...for helping me make new friends...
 ...such as the woman who answers calls for the emergency services.
...all the long weekends...
 ...which are always extended by several hours, what with your fascinating ability to wake up at 5am every Saturday and Sunday (or sometimes, amazingly enough, even earlier if it’s one of those rare occasions that I went out the night before).
…filling the silences in the house...
 ...with giggles, farts, excruciatingly high-pitched screams, the brain-numbing babble of battery toys and – rather brilliantly, even when you are sleeping soundly in your bed – a deafening roar when we turn on the stereo, which you have invariably switched on to maximum volume.
...not to mention the silences everywhere else...
 ...like in the library, for example, when we returned your story books and you were sad to see them go. I'm not sure, when the sweet librarian suggested you could take home a different Peppa Pig book, it was an entirely appropriate response to turn purple, scream bloody murder and repeatedly try to bite her. But still, she didn't call the police or anything.
...making my heart swell...
 ...not only with the love I have for you, but also with adrenaline – when I catch you on the third 'rung' of the bookshelf, because you have realised there's a valuable vase up at the top (possibly the only thing in the room you haven't yet licked).
... teaching me the true value of money
 I thought, what with frivolous purchases of Jimmy Choos and luxurious make-up having been replaced by cautious purchases of Start-Rites and Johnsons wipes, I had learned to appreciate it. But what really clinched it for me, I think, was looking up just as you posted that £20 note through the minuscule gap between the wall and the fireplace.
...helping me garden
 I understand that waiting for those tomatoes to turn red is just too much for you. Never mind. After months of tending those plants (which I grew from seed by the way, do you remember?), rather than plucking ripe juicy tomatoes for glorious summer salads, I will just look up recipes for green tomato chutneys which will take up space in the cupboard for all eternity – or until we move house.
...being so honest
 Like when you pointed at my thighs, laughing, and said: 'jelly!' it was a turning point for me. Really.
...being right next to me when I woke up this morning
 The fact that you prised open my sleepy eyelid, and then tried to lick my eyeball, is by the by. Even if not quite THAT close up, just like every other morning of my life, you were still the very first thing I wanted to see.

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Tags: cataplexy, fits, health, mum, narcolepsy, news-and-views, weird stories

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moirakellymk

I have just read this feature and the comments below. The latest comment below from Iwillybilly6969 is of particular interest to me as I am in the process of having narcolepsy confirmed. I have had these symptoms since I was in my twenties but have been consistently palmed off by doctors, have been the subject of jokes by familly and friends and made to feel that either I am exagerrating or that the solution lies in my own hands as my lifestyle is to blame. It is so debilitating that going to the cinema, theatre or concerts, is more or less a non starter. It was also one of the reasons that I gave up work 5 years ago with obvious severe financial implications. I was shocked when I contacted my health insurance provider to learn that this condition was not on their list as a recognisable condition. It is finally a relief in many ways to find that I am, at last, being taken seriously and that there is an actual known medical condition for which I may be able to obtain some assistance to alleviate the condition.

I am only at the start of my journey of research but I am dismayed at the comedic and flippant way this condition is portrayed in the media and the shocking lack of knowledge in the medical community given the large numbers of the population who suffer from these symtoms.

October 26 2012 at 6:05 AM Report abuse Permalink rate up rate down Reply

1 reply to moirakellymk's comment

cowie182

Hello, I was diagnosed with narcolepsy when I was 20 after being passed around doctors saying it was my thyroid, depression or drug use since I was 17. I went to see a consultant neurologist whom confirmed that I had narcolepsy mainly due to the obvious presence of cataplexy/ also combined with excessive daytime sleepiness, sleep paralysis and hallucinations.
In my own case my entire body collapses when I laugh, my jaw and eyes feel slack when am angry and I can feel weak when surprised. I have been on medication now for 5 years (I am 25). I do not wish to contradict anyone else's opinions as I am merely glad someone is talking about the disorder but amphetamines are not used in the uk to treat narcolepsy anymore, it is the less addictive modafinil that is used as it has less side effects, I take, twice daily 200mg, one on waking and one at middday. I have been prescribed a very low dose of clomiprimine which is an antidepressant which almost entirely prevents my cataplexy. I take 20mg at night before bed.

The clomiprimine should work after a few weeks entirely, I was given 10mg then would still experience complete collapse if my emotion was very strong, on 20mg I am fine- although if you ever stop or miss your meds the cataplexy will rebound severely.
Modafinil works almost instantaneously and all symptoms return as the dose leaves your system. The only side effects I have is dry mouth, so I ensure I either chew gum or drink plenty water.
An alternative is Xyrem, which is still negatively viewed as it is has the date rape drug ghb as a key ingredient. I believe it is taken just before sleep and then you have to wake during to take a second dose. I don't know too much about it.

I find that limiting carbohydrates- pasta especially allows me to remain alert much better.

For driving, you can apply for a 3 year medical license once your narcolepsy has been controlled for 1 year, you then must have your doctor confirm this every 3 years to renew your license. I am legal to drive and have never had an episode while driving, but I do not drive that often.

There is very little funding for research into narcolepsy, the books I bought were all very dated, one of which 'Narcolepsy: a funny disorder that is no laughing matter' had a lot of good insight on the disorder from a narcoleptic but the author favoured faith healing as opposed to medication.
I have found most of the narcolepsy associations of little assistance.
Sadly the first year of medicating was quite challenging, as I still expected to be instantly filled with energy and drive. I was not. The lack of understanding from other people is very frustrating. NOW I am almost a certified Personal trainer. and also got through my degree at University in Marketing, so it is only all doom and gloom if you allow it to be.
Please rely with any questions, also to let me know if you found any of this helpful.
Stay Strong -Cowie182

October 26 2012 at 9:21 AM Report abuse Permalink rate up rate down Reply

lwillybilly6969

This condition is not as rare as the article would imply, statistically narcolepsy and cataplexy effect the same number of people as MS. however the understanding of this condition in the uk is pityful.

the condition was not recognised in the uk until approximately 15 years ago, my mother has suffered with the condition since she was in her teens, she is now 79 and for most of her life she was misdiagnosed with depression and was on valium for 21 years.

the most common treatment for the condition is a dexa anphetamine, which over stimulates the body to achieve at best 80% alertness, however this in itself can cause hypertension, liver and kidney damage.

The cause of cataplexy is a lack of the hormone "hypocretin" which is released by the hyperthalamus which results in the body being flooded with the hormone that paralises the muscles during REM sleep and it is this that causes the paralasis and loss of muscle control. It is also a condition which has on several occassions resulted in sufferers being mispronounced as dead, as vital signs during prolonged episodes are difficult to detect by the untrained physician, and this is where the hidden danger of cataplexy lies.

this is a condition that requires higher levels of awareness within the uk, as highlighted at my local hospital recently when all staff including snr consultants admitted a lack of knowledge and demanded that i remained at the hospital whilst my mother was there during and after major surgery as they didnt know how to respond should she have had an episode.. Its a scary reality that whilst all doctors and nurses know about MS none of those i have encountered in the last 15 years with my mother knew about the condition with any never having heard of it..

i strongly recommend any that are interested search the american websites such as Stanford university for a real insight into the condition rather than the somewhat sensational and vague article here.

its great that the subject has been touched on, but more research and facts would have been appreciated.

April 19 2012 at 4:58 PM Report abuse Permalink +2 rate up rate down Reply

Kath McGarry

If this happened after her first baby at 19, how has she managed to have more than one child as the article suggests, it must be heartbreaking for her and her children , I cant image not being able to cuddle mine and not enjoy things we take for granted.

April 19 2012 at 4:41 PM Report abuse Permalink +1 rate up rate down Reply

rhi1987

How did she manage to have sex in the first place?

April 19 2012 at 3:36 PM Report abuse Permalink +3 rate up rate down Reply

contacthedownies

that must be offal i hope they find something that cant help

April 19 2012 at 9:17 AM Report abuse Permalink +4 rate up rate down Reply

rkarney

It's dreadfully sad for her, even tragic. But how irresponsible to have kids in such circumstances - how can they possibly understand what's going on, and who knows what effect it will have on their future development.

April 19 2012 at 8:32 AM Report abuse Permalink -17 rate up rate down Reply

3 replies to rkarney's comment

Richard Simpson

How bizzare, never heard anything like it, hope they can do something for the poor woman. Couldn'nt imagine not cuddling my own kids/grandchildren.

April 19 2012 at 8:23 AM Report abuse Permalink +11 rate up rate down Reply